One Caregiver’s Regret: How the CARE Act Could Have Helped

In August of 2014, Mary’s mother Eartha was discharged from the hospital after a short stay — an event that would have lasting consequences. When Mary arrived at the hospital that day, Eartha was ready to go, dressed and sitting in a wheelchair with a list of medications on her lap. Never given instructions on her mother’s new prescriptions, Mary missed out on a key piece of information — one of the medications was only meant to be given for a very short time. This was discovered months later, but it was too late. Eartha’s kidneys had been damaged irreversibly by the medication and were only working at 10 percent. Mary was given the choice to start her mother on dialysis or begin hospice care.

While caring for my Mom and Pop, I feared situations like this. What if there was something I didn’t know? What if I made a mistake? The reality is, nearly half of all family caregivers perform complex medical and nursing tasks — like managing medication, giving injections or cleaning wounds. Most do so with little or no training.

A commonsense solution, the Caregiver Advise, Record, Enable (CARE) Act, supports family caregivers from hospital to home and could have helped Mary and Eartha. Currently enacted in 25 states, the CARE Act makes sure:

The name of the family caregiver is recorded when a loved one enters the hospital.

The family caregiver is notified prior to the loved one’s discharge.

The family caregiver receives a simple instruction of the medical tasks they will be performing when their loved one returns home — like managing medication.

To Mary, receiving instruction about her mother’s medications could have been life changing. She shared:

My only regret is that the CARE Act, which supports family caregivers when their loved ones go into the hospital and as they transition home, had not been signed into law in Michigan. Would there have been a chance for the family to thoroughly discuss the medication dosage at discharge during an August 2014 hospital stay that eventually resulted in permanent kidney damage? Would the Christmas Eve hospital visit, with discharge on Dec. 26, 2014, have resulted in a more positive choice of treatment other than dialysis or hospice care for my 82-year-old mother? I will never know.

Fighting for the CARE ActDriven by her personal story, Mary joined AARP in the fight for the CARE Act in her home state of Michigan. Just last week, Gov. Rick Snyder signed the CARE Act into law, with Mary in attendance at the bill signing.

Where does your state stand?We’re fighting in states across the country to pass the CARE Act and support family caregivers like Mary.

In Alaska, Pennsylvania and Maryland, the CARE Act has passed the state legislature and is awaiting signature by each state’s governor.

In Kentucky, Louisiana and Minnesota, the CARE Act has passed one chamber of the state legislature and is being considered by the second chamber.

In Hawaii, the bill is now being considered by a House-Senate conference committee.

Mary and all of America’s 40 million family caregivers should be able to count on the support that the CARE Act provides. We will continue fighting until this goal is a reality in all 50 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands.

Elaine Ryan is the vice president of state advocacy and strategy integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.